Making data relevant: a case study

The following is a guest blog by Laura Conrad, policy officer at Barnsley Hospice. Laura first got in touch to register a cut with the voluntary sector cuts website, but it turns out that Barnsley Hospice also have a really interesting story about using data to improve the services they provide for their beneficiaries.

In particular, I think it shows the value of combining the data you hold with relevant datasets produced by the government or other bodies. For me, one of the hopes of open data is that it makes these combinations easier.

If there is one thing that people know Barnsley for, it is for being at the heart of the Miners Strike between 1984 and 1985. The very mention of the Conservatives provokes anger, contempt and language usually reserved for those who have committed the most heinous of crimes. A frequent misconception of Barnsley typically invokes images of a northern ghost town decimated by the collapse of heavy industry and an overreliance on the public sector.

Whilst not an entirely unkind assessment, this “grim up north” mentality is beginning to shift through the renaissance of the town as a Tuscan village, a relatively new and modern transport interchange and an appreciation for Barnsley’s countryside right at the side of the M1!

The third sector must also take some credit in engaging with communities to help plan and respond to local need. Labour’s recent by-election win was without a doubt predictable and despite the Liberal Democrats taking an absolute thrashing, the result showed more about wanting to keep the status quo within Barnsley, then the rejection of new ideas and the Big Society.

Barnsley is a deprived town and consistently scores near or at the bottom of various economic and performance indicators. Working at a hospice comes with its own responsibilities and challenges.

Firstly, in adhering to its charitable objectives: to provide specialist palliative care for the people of Barnsley and care for their families.

Secondly and perhaps most crucially: to secure sustainable funding, ensuring that the hospice remains cost-effective and efficient. Now that the background has been set, I will demonstrate how and why data and not just its collection, but its use, as well, is so important for Barnsley Hospice as a third sector organisation.

Barnsley Metropolitan Borough Council divides the town into 21 electoral wards, comprising 52 neighbourhoods and 7,000 plus postcodes; each of these neighbourhoods has its own socio-economic analysis attached to them. Traditionally third sector organisations have been data-lite. Hospices have been seen as ‘pink and fluffy’.

Yet, although the hospice covers the niceties, its remit is far wider, ever expanding and actually forms a core aspect of healthcare despite having to raise over half of its income outside of the National Health Service. Like the council, Barnsley Hospice is there to serve all of the people of Barnsley, although obviously on a smaller scale. It therefore made practical sense to align hospice data to council neighbourhoods.

The purpose was twofold: one, to establish a document which would be continually updated along socio-economic lines and two, so that hospice information could be effectively analysed according to the same baseline. The patient and fundraising databases were earmarked for change.

Change is not always well liked particularly when an old system has on the surface seemingly worked fine for years. Open communication with various teams to include its importance and their involvement within changes is essential to managing change. With a small team of volunteers, who really did not object to lots of data inputting (though their fingers may have said differently), new area codes were created on the hospice’s fundraising database, by inputting all 7,000 plus postcodes into 52 new categories to correspond with the 52 neighbourhoods.

Some smaller work was then done to establish which postcodes would then fall into the Yorkshire and Humber area, the North West and so forth. Aided by pre-determined fundraising categories such as corporate donations and individual giving etc., Barnsley Hospice has been able to see where its support comes from across the borough much more clearly; without having to rely on anecdotal evidence.

Nonetheless, having this data is only good if it will actually be used to develop and progress the organisation. Barnsley Hospice is now able to use this information to increase marketing for a community event in one area, promote the lottery in an area with a lower than average household income (small amount to pledge for comparatively large award), push corporate giving in areas where private sector is concentrated and so forth.

Marketing and mail shots can be much more selectively targeted whilst ensuring that the hospice’s mission and values are not lost. Key performance indicators and trends can be more easily monitored and the hospice responsive to change and fluctuations much quicker through a greater understanding of its own data.

With regards to patient data, the current system is not yet capable of having area code categories. Luckily, reports can be exported to Excel, so with some spreadsheet wizardry and the use of a few pivot tables, the hospice was able to see its referral patterns over a fixed-period of time. The results were stark and proved that as an organisation we were guilty although not deliberately of the inverse care law, which is that “the availability of good medical care tends to be inversely (turned backward) with the need for it in the population served [Julian Tudor Hart in 1971]”. The data was proving that the hospice needed to widen access to care for those in areas with greater socio-economic deprivation.

Focus groups were immediately established with referrers to try to understand more; yet some were hard to engage. Internal meetings were planned to totally redesign patient services marketing and a new strategy created to get GPs onboard based on clinician’s feedback. Progress is being made but Barnsley Hospice is mindful that a shift will not occur overnight. There will have to be a cultural shift and long-term data collection and management to analyse and improve referral patterns.

This strategic development is totally evidence-based and inequalities would not have been brought to light if the hospice was not collecting data. Too often people would sooner muddle along then do something different. You should do something different; you might just surprise yourself for the better.

Data has also proven that the hospice must do more to widen access to care for those with a non-cancer diagnosis; however as an organisation we are not alone in the bulk of referrals being for those patients with cancer. This is because cancer has a more predictable disease trajectory then neurology or muscular-skeletal conditions as an example. Third sector health and social care organisations in a period of major change to funding and commissioning together with an increasingly challenging and uncertain economic climate must do more to prove their worth and that their services are vital to the communities which they serve.

Information and transparency should not be underestimated in terms of their importance and significance to new GP consortia. Comparatively to other elements of healthcare, the hospice contract is small. We do not want to be forgotten. If other organisations were as good at collecting their data and as open with their data as Barnsley Hospice is trying to be, then this might make things easier for collaboration. Voluntary sector organisations working in the same field could in theory come together in their own consortia to make allocation of funding from GP consortia easier.

Hopefully Barnsley can continue to look forward and be known for its innovativeness, effectiveness and future not just its past.